Topic: help

my dad was just dx with this disease. at first theydx him with pancreatic cancer. then after his whipple they informed us that it was this disease. I do not know anything about it. What are the statistics. The doctor could have given my dad the prognosis, but I feel he is protecting us from knowing. Please if anybody can give me anyideas on the process or where I can find more information than what is at this sight I would appreciate that. Is tumor was in the ampulla vater and one of the lymphnodes removed showed cancer. Help me understand I live across the country from him I want to spend time with him if it is not a good prognoisis. Thank you

Re: help

Dear Lem -

Cholangiocarcinoma is  a rare form of cancer and not easily treated.  It sounds like your father had surgery.  How big was the tumor they took out?

Has the oncologist recommended chemo or any clinical trials or any other procedures?  You may want to consider going to one of the better cancer centers such as MD Anderson, Mayo Clinic, or Sloan-Kettering.

I had my liver resected 4.5 months ago.  They also found cancer in one of nine lymph nodes and they told me it would probably come back.  It already has - I had three or four small tumors at my last scan about 6 weeks ago.  I am on a clinical trial for Sorafenib - you can access my blog via this website.  I suggest you read the family blogs,  these discussion pages, and the patient histories.  Also there is  a cancer nutrition website. You can also get info off the internet by searching the website.  The American Cancer Society is a big help, as well as, the National Cancer Institute.   It is difficult because there is so much conflicting information out there in terms of alternative treatment.

Does your father have someone who can go to the doctor with him.?  Does he like his oncologist?  Where does your father live?

I have chosen to participate in this clinical trial, but chemo will be my back-up plan.  I try to diet, eath healthy, and get exercise.  I was taking some supplements, but I have suspended those for the time being.  It helps to have a good attitude and a suport group.

This disease can take a person quickly, so I would make plans to see your father as much as possible this year.  If he lives, you'll be that much better off.  I have to confess, I have not studied the stats for cholangiocarcinoma, but I know people who have their livers resected have a 40& chance of being alive in five years.  I think I've been told the average survival rate is one to two years. 

I'm sure others from this website (which is a life-saver) will have some advice for you.  If you ever want to contact me directly my e-mail is buckskin@ouraynet.com.  My cell phone number is 970-596-1068.

It's not all bad, having cancer.  You have time to get your life in order.  People are good to you.  You make yourself live in the moment and you really get to enjoy life.  At least it's been that way for me.

-Caroline Stoufer

Re: help

thanks Caroline for replying his tumor was 3.5 I have no idea if it is in the liver. All I know is that the cancer cells are this type and it was in the ampulla vader the pancreas and lymph nodes. I live in callie and he ilives in the east

Re: help

When I was first beginning to study about this disease, I found one of the best articles published by John Hopkins Hospital.  The web site is  www.hopkinsmedicine.org.  After going to this site, type gastroenterology in the search block and it will take you to J. H. Gastroenterology & Hepatology Resource Center.  Highlight Digester Disease Library and you will see Biliary Tract.  Highlight Biliary Tract and it will bring up Cholangiocarcinoma.  Hope this helps - it is a very informative article.  Good luck.

Re: help

thank you it was helpful. Ican't believe how vague the information is and how there really is not much. So thanks for the website developers and those who contribute